Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Tuesday, September 20, 2016

Magic Kingdom with Mast Cell Disease and Service Dog

If you follow me on Instagram, then you know I just got back from a week in Orlando, Florida! The first part of the week was spent at Disney. After we tackled 3 parks, we went to The Mastocytosis Society 2016 conference. I'll be blogging about everything from this trip, but in an effort to avoid serious blog post overload, I'm breaking it into pieces.

Today is going to be the first of 3 similar posts...so bear with me or feel free to skip and wait for the conference posts or my next exciting updates about new medications, blood draws, and brain MRIs. In case the title didn't give it away, this post is about the first of three parks that we (my mom and I) went to at Disney in Orlando. This was "official" business for Trippin' with Jamie, so don't think it was all fun and games...we were working hard!

In the airport getting ready to board our flight to Florida!

I wanted to write these next few posts because as we were preparing for this trip, I read about a lot of other people's experiences at Disney with various chronic illnesses and service dogs, so I could get a better idea of how to approach the day and what to expect. Some of that info was so valuable, so I wanted to share my experiences with anyone else who may be preparing for a similar trip!

Our first day was at Magic Kingdom. We got there early because we heard the rope drop ceremony is fun to watch and because we wanted to go to guest relations. One of the accommodations that Disney offers in certain circumstances is a disability access pass. This is not a skip-the-line pass like it was years ago. Instead, you get to "virtually" wait in line. This means that you will still wait the same amount of time as you would have had to in the regular line, but you don't actually have to be there. We went to request this for a couple of reasons, both related to the unpredictability of my body and symptoms.

When my stomach/intestines decide it is time to "empty all contents" I have minutes (hopefully) to get to a bathroom. I can usually make it 10-15 minutes before things really go south (pun intended =P), but if we've been waiting 30-45 minutes for an attraction and have to all of a sudden rush off to a bathroom, we've just lost all that time plus our spot in line. Along the same theme of unpredictability, my mast cells can often run the show as well. If I get a mast cell alert from Leni, I need to start taking my medications quickly. It's not exactly appropriate/socially acceptable/whatever to start pulling up medications in syringes and unhooking/hooking up feeding tubes in the middle of a packed queue. Plus, if it's a "shock" reaction (goes from 0 to anaphylaxis FAST), I need to get away from whatever is triggering me, likely bug spray/suncreen/lotion/etc. Again, results in losing our spot in line, possibly after waiting for a while. Having the option of the disability access pass allowed us to wait elsewhere and have the flexibility to run to the bathroom or take medications as needed and stay out of packed lines. That said, we ended up not using the disability access pass at all at Magic Kingdom because we used the regular Fastpass+ system and/or got to rides or attractions as soon as they opened and avoided lines.

Like I said earlier, we got to the park when it opened for the rope drop. Once we got in the park, we went straight to the Seven Dwarfs Mine Train. At rides that service dogs are not permitted on, you have either the option of doing a rider switch where one person holds the dog while the other rides then they switch or they offer a temporary crate for the dog and a cast member will stay with them for the duration of the ride. Mom and I wanted to ride together, so we asked for a crate. It was set up just by the exit, so we loaded Leni up and then Mom and I were able to go on the ride and pick her up when it was over. I was nervous to see how she would do! This was our first ride, we had just entered the park, the area the crate was in was dark, and we left her with strangers...but she was fantastic.

Actually, she was pretty incredible all day. Her favorite part was watching the ducks while we waited in line to see Merida. Of all the things that could distract her at Disney, the ducks were the things that grabbed her attention...go figure... =P And yes, I did just say we waited in line to see a Disney princess...I almost can't believe I'm admitting to that...Nick and I saw Brave a few months ago and loved it. Apparently Nick thinks that Merida and I are similar in some ways, so he asked for a video of me and Leni saying hi. Am I a good wife or what??

Doesn't Leni look thrilled to be meeting her first Disney princess??

After meeting Merida, we went to AdventureLand to ride the Jungle Cruise and Pirates of the Caribbean. Both allow service dogs to ride as long as they stay in a down-stay in the boat during the ride. The Jungle Cruise was corny, but funny. Leni just lay at our feet as the boat slowly cruised along the river while our guide told all sorts of dad-quality jokes and kept us laughing. Pirates of a Caribbean was a different story...if you have a service dog, be aware that while this ride does allow them on, it's not just a quiet ride on a boat. At one point during the ride, it is pitch black and all of a sudden goes down a quick, steep drop and you may get wet (less so in the middle/back of the boat). Leni was not a fan. The sudden drop in the darkness caught her off guard. She sat up quickly and stuck her head in my lap which she does when she's a bit unsure. She went back down when I told her, but I could feel her restlessness and unease for the rest of the ride. I would not take her on it again.

After Pirates, I was fading. Leni had already alerted to a couple low sugars, but I was starting to feel the heat (guess who remembered Leni's cooling vest but not hers??). One nice thing about Disney is that there are A LOT of air conditioned places everywhere. Restaurants, shows, even some of the waiting queues for rides are all a nice, cool escape from the Florida heat. We took full advantage of this. While we were hoping to get to Tomorrowland and find some indoor activities, my body decided we weren't going to make it that far. Thankfully, in Frontierland, the Hall of Presidents was close by, so we took a break from the heat and learned (I mean, refreshed our memories =P) about our presidents. We got there earlier, but all of the shows have seating in the waiting areas as well, so I was able to sit down and recover a bit, watch the show, then was ready to go (-ish) again.

We stopped at a service dog relief area before heading to Tomorrowland. Not much to write home about...literally...the area was about 2 feet by 3 feet and wedged in some of the weird unused space between buildings. Maybe if Leni really had to go, she would have, but she showed little to no interest. At this point we also put on her cooling vest and boots as it was getting quite warm. I think if Leni had her way, she'd prefer to have burnt paws than wear her boots. My main take away from this trip was that she needs more work in her boots. While she walks fine and will still alert (we worked HARD on this...her paws feel different so she doesn't like to use them the same), getting her to tuck and lie down normally is a challenge. But, she's the dog, so she doesn't get to make decisions...at least not when it comes to her boots...

At a show (Carousel of Progress, I think) after pulling out her cooling vest and boots.

After our brief respite in the air conditioning, we headed back across the park. Let me just say, do not underestimate the power of Florida heat and humidity!! Especially if you're not used to it...we had only made it a short distance before I was already feeling like I was overheating again. We did make it to Tomorrowland, but my energy was quickly fading at this point. We went to watch 2 shows to give me some more time to recover and see if we had more time left or not. Leni alerted just before entering the first show so we took a few minutes for me to take my meds and evaluate how I was doing. My mast cells seemed to be relatively stable/cooperative after taking my meds, so we decided to keep going for a bit and see how things went.

Our last ride was Buzz Lightyear's Spin and Laser (or something like that =P). Don't knock it 'till you try it! You get in a 2-person car with a laser gun for each person and a spin controller in the middle. The whole ride has targets that you try to shoot and spin the car around for better angles. Sounds corny, but was actually super fun! However, this was ride #2 that Leni did not like. To get on, there is a moving walkway that goes along side the cars and you have to enter while the floor is moving. We ended up having them stop the ride so we could get on because it was also narrow and Leni couldn't climb on quick enough. Same thing getting off, plus now she was backwards since the cars are small and she wasn't able to turn around (or move much at all). I would probably take her on this again since she wasn't distressed, but would need to make sure the walkway could be stopped again to make sure she is safe getting on and off.

My energy was all but gone at this point, so we headed out of the park. We had made reservations for Afternoon Tea at the Grand Floridian (my mom is a HUGE tea fan), so we took the monorail to the resort. On the way, we stopped at a couple other resorts to take photos and just see in person to get a feel for them to better advise Trippin' with Jamie travelers.

The Afternoon Tea at the Grand Floridian was FANTASTIC!! By far the highlight of the day. Our waiter and the chef were so accommodating for my allergies. They were extremely knowledgeable about what was okay and not okay for my allergies and gave me options for substituting safe ingredients for my allergens. I posted on my Instagram (@kboka27), but I'll say it again here. Eating out with food allergies is always nerve wracking because I am literally putting my health (and life) in a stranger's hands. I am not sure the last time I felt as safe eating in a restaurant as I did at this tea. That said, I ended up just eating some fresh fruit and toast (gluten free, dairy free, soy free) with butter (also GF, DF, SF). I know that sounds boring, but I don't know the last time I felt safe eating something even remotely related to one of my allergens in a restaurant. Typically I'll go for foods that are naturally gluten and dairy free and just emphasize how important it is to avoid any cross contamination. It was nice to have them ask me what I wanted and they would just make it for me and know that they understood how to handle severe allergies. It was also cool to chat with our waiter who has a nephew with severe food limitations as well, so he understood what it was like to live with.

After tea we got back on the monorail to get back to Magic Kingdom, found our bus to the All-Star Sports Resort, and as soon as we were back, went to bed...Okay, maybe we took Leni for a dog walk (as opposed to a service dog time-to-focus-and-pay-attention work outing) and grabbed something to snack on, but I was pretty wiped from the day...I think I fell asleep before 8pm.

I fell asleep, so Mom and Leni had a cuddle session!

So that was our first day at Disney in Magic Kingdom! Stay tuned for our continued adventures at DisneyWorld!